Living with the change, unpredictability, and discomfort of menopause symptoms is hard enough. Imagine adding a chronic medical condition on top of the hot flashes, interrupted sleep, and brain fog. Which effects are from menopause, which from the medical condition, and which from the medications used to manage either?
Team Gennev came across Dr. Shema Tariq’s research on HIV and menopause and found it so intriguing and important: how do you help women who are managing menopause in addition to a whole host of complicating factors?
Menopause and chronic medical conditions like HIV take a toll not just on our bodies but on our psyches and spirits, our relationships, our work, our families and friends. We were excited to see someone taking on the challenges of helping women and families in this very difficult situation.
Dr. Tariq is at University College London in the Centre for Clinical Research in Infection and Sexual Health where she continues her research in improving the health outcomes of women, particularly those with HIV.
Following is our conversation with Dr. Tariq on her continuing research and how findings that apply to women with HIV who are in menopause may also apply to women with diabetes and other chronic conditions.
I am a doctor and researcher who has specialised in the health and well-being of women living with HIV for over ten years. We now have very good treatment for HIV so people who are diagnosed with HIV early and go on treatment are likely to live long and healthy lives, with normal life expectancy. This means that more and more people living with HIV are reaching their 50s, 60s and beyond. Looking at women, there has been a five-fold increase in the number of women living with HIV in the UK aged 45-56 (which is when most women reach menopause) over the past ten years. This led me to develop the PRIME Study, a UK study (and one of the largest in the world) looking at the impact of the menopause in women living with HIV.
So I can only really comment with confidence on HIV as that’s what my research focuses on. HIV is now a long-term condition as a result of successful treatment (where it is available). We are now seeing the first generation of women living with HIV reach menopause in large numbers, which is something to truly celebrate.
We found that the majority of women living with HIV aged 45-60 in our study had some type of menopausal symptoms (between 70-90%), and that these symptoms affected their mental health. We also found that women living with HIV were more likely to have sexual problems than those without HIV.
Women described particular challenges during menopause as a result of living with HIV. These included difficulties deciding what were menopausal symptoms, what were HIV symptoms, and what might be medication side effects. They also highlighted how hard it is to manage a long-term condition when you start developing menopausal symptoms. This is what one woman in our study said:
“If I wasn’t coping with HIV and I was dealing with menopause alone, maybe it would be easier. I’ve got to cope with the two at the same time. If you haven’t slept for the whole night and you need to take medication… it just gets so annoying.”
I haven’t done any research with other groups yet, but a lot of what I have heard from women in the PRIME study doesn’t seem to be about HIV itself. They describe issues with trying to figure out if symptoms are due to menopause or their condition, and also the difficulties of managing a medical condition when you start developing menopausal symptoms such as poor sleep, forgetfulness or mood changes. Women also highlighted how hard it was to get advice from doctors as they were often ‘bounced’ between their GP and their hospital specialist. I think many of these things could apply to women with other conditions. We are hoping to do some work with women with diabetes, and I know from talking to this group of women that they are facing similar challenges.
Women are concerned about interactions between medicines and HRT, for example; how do you recommend they handle that issue?
The first place to go to is your GP, hospital specialist or pharmacist – they should be able to advise you. If you are already on medication you should not start anything new without telling your doctor or pharmacist first. This includes herbal medicines. We’re lucky working in HIV as we can use the Liverpool Drug Interactions website – a fantastic resource that helps us identify potential drug interactions.
Yes many women felt under-informed and under-prepared for the menopause. Nearly half of all women in our study said they had not received enough information about the menopause. I do think there’s a wider problem with women not having enough information but it is especially difficult for women living with HIV. In the UK, most women living with HIV come from African backgrounds where culturally it might be taboo to talk about these things.
Working with the HIV organisation AIDSMap, we have developed a patient leaflet about the menopause specifically for women living with HIV. I recently wrote national guidelines for the care of women living with HIV, recommending that all HIV clinics provide information to women about the menopause and have proactive conversations with them. I also regularly deliver workshops within HIV charities to try and engage women in conversations and raise awareness.
In terms of broader society, I feel optimistic. There are a lot more conversations happening about the menopause on TV, radio and social media. There’s also been a lot of attention on supporting women in the workplace through the menopause. Menopause was even brought up in the UK parliament recently. I think, finally, menopause is being dragged out of the closet.
Despite HIV being treatable, and (for those who are controlled on treatment) there being no chance of passing it on through sex, HIV is still highly stigmatized. That’s a real challenge for all aspects of living with HIV. When it comes to menopause it might mean that women are socially isolated, with fewer friends or family to talk to. Or they may feel they can’t talk about their menopausal symptoms to friends, as they may be worried that this will mean sharing their HIV status.
That’s why I think HIV clinics have an important role in supporting women – for many it’s a safe space. But the thing that came out strongly in our research was the importance of peer support – support from people with the same condition or life experience as you. Talking to other women living with HIV going through the same thing is invaluable, and allows women to have more open conversations. This definitely needs more investment.
In terms of HIV, we have produced a leaflet with AIDSMap: http://www.aidsmap.com/Menopause-and-HIV/page/3117291/
I would also point women to our study report: https://www.ucl.ac.uk/iph/research/sexualhealthandhiv/prime-study/PRIMEPDFs/primereport
There isn’t a huge amount out there for women with other long term conditions but I would still advise looking on the main menopause websites as a lot of the information applies to all women:
Menopause Matters: https://www.menopausematters.co.uk/
Women’s Health Concern: https://www.womens-health-concern.org/
I think there’s a lot of work to be done on educating health care providers about menopause in general. When I was at medical school (well over 20 years ago), I didn’t get any teaching on menopause at all. I’m not sure that has changed much, sadly. So introducing teaching on menopause into medical and nursing training would be a good start.
We’ve been doing a lot of work with health care providers in HIV in the UK, presenting at conferences, giving training in clinics, and writing national guidelines. This definitely raises awareness and helps improve health care providers’ knowledge and skill. We’ve also produced a guide for GPs with the British Menopause Society:
To be honest the biggest thing is to get health care providers to recognise that menopause happens, and that it can be a difficult time for some women, especially if they are already managing a medical condition.
Our thanks to Dr. Tariq for sharing her expertise and research with us! Learn more about the PRIME (Positive tRansItions through the MEnopause) Study on the University College London website.
If you're dealing with menopause in addition to an existing health condition, we'd love to know how you're managing both. You can comment here, find us on Facebook or in Midlife & Menopause Solutions, our Facebook group. You can also join us, anonymously, if you prefer, on our community forums.